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Help Support Scotland's Sick Children

by Glasgow Children's Hospital Charity
Help Support Scotland's Sick Children
Help Support Scotland's Sick Children
Help Support Scotland's Sick Children
Help Support Scotland's Sick Children

In recognition of Cardiac Awareness month, we are privileged to share the story of little Wren from Dundee.

Wren was born with a large ventricular septal defect, and had open heart surgery 4 months ago. Wren’s mum Shauni shared her experience to help raise awareness of congenital heart disease, which affects 1 in every 100 babies born in Scotland.

As the national service provider for cardiology, Glasgow Children's Hospital treats every child in the country with a heart condition.

“When our beautiful baby entered the world we naively were on cloud nine, blissfully unaware that inside that perfect tiny body lay a missing piece of Wren’s heart.

 

The first few months of her life were tainted by hospital visits, scans, tears, worries and the question - ‘why us?’

Our time spent at Glasgow Children’s Hospital will forever leave me with mixed emotions.

When we arrived we were anxious and angry. We left feeling thankful and excited for the future.

Inside the walls of that hospital hold some of my heroes.

The surgeons who saved our baby, cardiac nurses who cried with me, play assistants who brought fun into some dark days, the Charity team who were always there to listen, every staff member - thank you!

We went into that hospital broken and came out with a story that will continue to shape our lives forever.

 

The question we kept asking ourselves was ‘why us?’ We think we know the answer.

Wren’s story has affected more people than we could ever have imagined. We have been able to raise awareness and share our knowledge. The positive outcomes from this journey have far outweighed the bad.”

We are incredibly grateful to Shauni and Wren's family for sharing their story.

You can help children like Wren. 

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Nathan's Story

When Nathan was born in October 2015, his parents Lesley and David were told that they had a long road ahead of them.

A Devastating Diagnosis

Nathan was born with Tetralogy of Fallot – a form of congenital heart disease which results in 4 defects of the heart – and a Cleft Palate.

“All I remember asking was if he could be fixed. We were told yes, but although this was positive, for us it was just the worst possible news. We were devastated”.

Although Lesley and David were overwhelmed by all of the information and uncertainty surrounding Nathan’s conditions, from the moment they arrived at the Royal Hospital for Children, they felt inspired and were given invaluable support which made them hopeful for his future.

“We’ll never forget walking into the children’s hospital for the first time – we thought what was happening was the worst thing in the world.

“Then we saw children that were much worse off than Nathan – that was a reality check. As much as we didn’t know what Nathan’s future would be, straight away we tried to be more positive”.

Feeling Inspired

Now, the couple are doing all they can to fundraise for Glasgow Children’s Hospital Charity to help support all of the babies, children and young people treated at the children’s hospital which became their home for 3 months.

 “Coming into the hospital changed everything for us, so we knew we wanted to do something for Glasgow Children’s Hospital Charity”.

Throughout their time in hospital, Nathan, Lesley and David benefitted from the work of Glasgow Children’s Hospital Charity.

The family initially supported the charity’s Little Hearts Appeal to fund the UK’s first 4D Cardiac Scanner. This state-of-the-art piece of equipment will help Nathan throughout his cardiac journey, by providing the medical team with the most detailed images of his heart for successful treatment.

As days turned into weeks, which turned into months at the children’s hospital, Lesley and David started to notice the mounting costs of having a child in hospital.  

They were referred to the Family Support and Information Service funded by Glasgow Children’s Hospital Charity. This service, which provides practical, emotional and financial support to families in the hospital, guided the couple through their application for Disability Living Allowance.

 “The Family Support team made it all so quick, easy and took away the stress from the daunting forms. We’re so glad we were referred and applied for support. It’s a huge weight off our shoulders.

“I was really concerned about going back to work and missing out on time with Nathan, as we missed out on so much during his first 6 months. The allowance means that I can possibly return to work on 30 hours instead of 37 hours per week, giving me an extra day to spend precious time with Nathan”.

A Critical Time for Nathan

Nathan’s complex open heart surgery to repair the four abnormalities with his heart lasted an agonising 15 hours. Although the repair was a success, Nathan was still left with two leaking valves which will require further surgery in the future. Post-surgery Nathan was then transferred to the Intensive Care Unit on ECMO (a heart and lung bypass machine).

Little Nathan went on to spend over 8 weeks in ICU - a frightening and stressful time for him and his family.

“There was a lot of back and forward getting him back to a good place. It was really frustrating and felt so unfair on Nathan, we couldn’t see an end to it."

  

While in ICU, Nathan was visited by Glasgow Children’s Hospital Charity’s Readathon volunteerswhich provided a welcomed distraction to the whole family.

“Nathan loves being read stories. One of the volunteers let us pick a book for him and we read him the story every day – he loves it! It’s about a dinosaur because his big sister Freya (7) loves dinosaurs. She likes to read it to him herself, it’s really special to see”.

Nathan also enjoyed visits from Mickey Mouse and the Scottish Women’s Football Teamorganised by Glasgow Children’s Hospital Charity. While Nathan was excited about seeing the world’s most famous mouse, the visits were a huge morale boost for his parents too.

      

A Turning Point

After more than 2 months in ICU, Nathan was transferred to the Cardiology Ward. His parents were delighted that he had turned a corner and was on the home straight. Lesley and David were even more thankful that they would now be able to stay by his side thanks to the Pull-Down Bed in his room, funded by Glasgow Children’s Hospital Charity. 

“I couldn’t wait for Nathan to be transferred to the ward so that I could stay with him. The Pull-Down Beds are amazing - they’re really comfortable. You get to sleep next to your baby, so they’re ideal. I think it’s actually helped with the transition to getting home by giving us more time to learn how to care for him 24/7”.

As Nathan built up his strength, the Play Room on his ward funded by Glasgow Children’s Hospital Charity became a place for him to play with his big sister Freya who had missed out on precious time with her new baby brother while he was in ICU.

“Freya loves the play room. It was a really difficult time for her not getting to spend time with Nathan when he was in ICU. Now she gets to play with Nathan there and has been able to meet other kids her age whose siblings were also really unwell”.

Although Nathan was transferred to the Cardiology Ward, he still had to make another trip to theatre. This required him to be nil-by-mouth for several days which was even more difficult for Nathan as he had begun teething too. His parents were thankful for the charity’s Mobile Sensory Unit, which helped to calm and distract Nathan until his surgery.

     

Later this year, Nathan will return to the children’s hospital for his Cleft Palate surgery. He will benefit from the charity’s latest appeal which funded a state-of-the-art surgical microscope. This piece of equipment will be used for procedures like his to help repair the hole in his mouth.

Nathan is finally home, although there are still uncertainties around how his heart will cope with his leaking valves. Inspired by the families they have met at the hospital, Lesley and David have joined forces with friends and family to fundraise as #TeamNathan. The couple have already raised thousands of pounds for Glasgow Children’s Hospital Charity and are showing no signs of slowing down, determined to help many more children just like Nathan.

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Jessica
Jessica

Schiehallion Appeal - Help Our Kids Beat Cancer

This week, two more children in Scotland will be diagnosed with cancer. 

More than two thirds of those children will be treated in wards 2A and 2B, known to many as Schiehallion, at the Royal Hospital for Children in Glasgow.

Although 8 out of 10 children with cancer will survive beyond 5 years, cancer is still a leading cause of death of children in Scotland.

Our Schiehallion Appeal - in partnership with the Daily Record and NHSGGC - hopes to raise £500,000 to enhance the clinical trials centre in Schiehallion, and bring more of the latest cancer treatments to Scotland. 

Clinical trials give children access to a new type of treatment when conventional treatments have failed. With your support, we hope to bring more early phase trials to our children's hospital, giving young patients from across Scotland the best possible chance in their fight against cancer. 

Professor Brenda Gibson, Professor of Paediatric Haematology at the Royal Hospital for Children explains why your help matters: 

We named the ward after the mountain - Schiehallion - to mirror the journey for children with cancer. We recognise that it’s an uphill struggle, but we also recognise that you can walk up a path with lots of people who will get you to the top. 

"The Schiehallion Appeal will give us access to new drugs for children who have failed conventional chemotherapy. We hope that everyone will get behind our appeal to help children with cancer in Scotland”.

Please, help our kids beat cancer by showing your support for our Schiehallion Appeal.

Links:

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L1
L1

 

 

Little Laurie was just 4 years old when she was diagnosed with a life-threatening brain tumour. To remove the tumour, Laurie required life-saving surgery which left her unable to eat, walk or talk. After weeks of intense therapy and incredible care from the team at the children’s hospital, bright and bubbly Laurie has now made a remarkable recovery. Read her inspiring story as told by Mum Lesley and learn why her family is fundraising for Glasgow Children’s Hospital Charity:   

Laurie had been sick for a month but it was very odd. Her sickness was sporadic, happening days apart and only in the mornings with her holding the back of her head.  

We went to our local hospital, where Laurie bravely stayed still for a 20 minute MRI scan which revealed a substantial growth at the back of her head. 

The news was devastating. No-one could have prepared Jamie and I for it. It was a huge shock and a very scary time for all of us.

Laurie was taken to the children’s hospital in Glasgow for the first of her life saving operations which would involve inserting a drain in her head to relieve the pressure created by the tumour. 

Her next operation was to remove the tumour and lasted an agonising 12 hours. For Jamie and I, it was the longest day of our lives. 

I remember taking Laurie to the theatre and being terrified that this might be the last time she would behave and act like the little girl we had known and loved for 4 years. The cheekiest smile, funny faces, and caring nature - was she ever going to be the same? 

While the operation successfully removed the tumour which thankfully wasn’t cancerous, Laurie had a much longer recovery ahead of her than we originally thought. It took her 4 days to come round from the operation after developing a virus. When she did eventually come round, she was mute.

For the next 2 weeks Laurie was tube fed and needed a wheelchair or carried as she was too weak. She also started physiotherapy to rebuild the strength she had lost. Her coordination was poor and her eyesight had deteriorated due to the swelling in her brain. Laurie needed to be taught how to stand up, sit down, crawl and walk. 

We embarked on speech and language therapy to bring back her swallowing reflex and used picture boards to let her tell us what she wanted. She could fully understand what was being said but was unable to communicate back. Then one day she started talking again. It was a beautiful sound to hear her speak. 

Eventually Laurie was able to have the external drain removed from her head and after 4 weeks of incredible care from family, friends, consultants, doctors, nurses, physios, speech and language therapists, play staff and volunteers, Jamie and I were finally allowed to take her home to Iona and Ben. This was the first day Laurie and I had gone home for a month. I promised her I would never go home without her and I didn't.

Since then Laurie has made an excellent recovery. Her balance and coordination is coming on leaps and bounds. She goes skiing, swimming, climbing and has achieved riding her bike without stabilisers which was a hugely proud moment. 
To see Laurie embrace life with such vitality and fight to come back to full health is wonderful. Jamie and I are very proud of what she has achieved in the past 6 months.

The care and support Laurie received at Glasgow’s Royal Hospital for Children was phenomenal. I had never truly appreciated the incredible work that goes on there, and while it was a traumatic experience, Glasgow Children’s Hospital Charity really changes the dynamic of the hospital and helps to lift the spirits of the kids and parents there.

It will never be possible for us to thank everyone enough who helped us. However, if we can raise some money for Glasgow Children's Hospital Charity it will help them support other families who are in a similar situation in the future. 
 

L2
L2
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We are privileged to have the support of 12 year old Jamie Denvir and his mum Susan, who are backing our Christmas Appeal this year. Susan told us about Jamie's incredible journey, and their reasons for getting involved.

I’m writing to ask for your help this Christmas on behalf of my son Jamie – the bravest boy I know. Jamie started life as an energetic wee boy, a great footballer, loving life and getting out and about. He was never a wee boy who sat inside all the time.

It was October last year when our lives changed forever. One night we were dooking for apples and playing hide and seek in the garden during our annual Halloween party. The next day Jamie was taken to hospital with a sore eye. He wouldn’t come home again until the following June – those were the hardest eight months of our lives.

Eight long months in hospital

Our hospital journey started on the first of November, when doctors found a tumour on Jamie’s brain. We waited for days, fraught with worry while Mr Roddy O’Kane and the neurosurgical team learned all that they could about Jamie’s tumour before operating. On Thursday the 12th of November Jamie went into theatre at the Royal Hospital for Children in Glasgow.

Jamie spent 30 hours in theatre as Roddy and the team worked through the night to save his life. It was a long time for Jamie, a long time for us, and a long time for the surgical team. To be told that they had removed less than 40% of the tumour was hard for us all to hear.

This was just the start of our journey through the hospital, and we spent the next five and a half weeks in the intensive care ward. Jamie’s nerves were damaged following the surgery so he required a tracheostomy, and due to the risk of infection we used to spend long days in the room, never leaving the ward, never leaving his side.

What made this time easier for us was that I could stay with Jamie. I lived in the hospital with him for those eight long months, sleeping on the pull down beds that the Charity has put into every room. 

To have the ability to spend the night in the hospital meant that we could have our time next to Jamie when he needed us most, which was incredible as a parent. We became part of the hospital, part of people’s lives.

What was hard was knowing that Jamie’s dad Bobby, sister Kelly and new puppy Mara were still back at home.

Fearing the worst

During this time we had the reassurance that Jamie was getting better, but in April he deteriorated and developed hydrocephalus – a dangerous build-up of fluid on the brain. 

Again we were faced with losing him. Our whole family came to the intensive care ward to be with him, but once again Roddy saved his life, inserting a plastic shunt in Jamie’s brain and removing part of Jamie’s cerebellum.

In June this year it was finally time to leave the hospital.

Now we’re back at home life has changed forever. Jamie sleeps in a hospital bed in the living room and Bobby and I take turns to sleep on a mattress on the fl oor next to him. Leaving hospital doesn’t mean leaving the challenges behind.

Jamie’s recovery will be long and hard. We hope that after Jamie’s surgeries he might have a course of radiotherapy or chemotherapy, and once his treatment is finished we can give him the best from life.

Jamie is an amazing boy, he’s our boy and we’re so proud of him. He’s been through so much. There’s a lot we don’t know, and a lot that people can’t tell us.

The surgery doesn’t actually worry me now – it’s the unknown.

Please support children like Jamie this Christmas and help Glasgow Children’s Hospital Charity raise £200,000 for a neurosurgical endoscope.

As a parent who has watched her son battle a brain tumour and hydrocephalus, it’s wonderful to know that Roddy and his team could do even more to help seriously ill children with this equipment.

If you can donate, however small or large the donation may be, you will be helping to save children’s lives.

Thank you.

Susan, Bobby, Kelly and Jamie Denvir

Please support our Christmas Appeal - donate today or text CHILD to 70707 to donate £5. Thank you.

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Organization Information

Glasgow Children's Hospital Charity

Location: Glasgow, Scotland - United Kingdom
Facebook: Facebook Page
Twitter: @yorkhillcharity
Project Leader:
Maralyn Boyle
Glasgow, Scotland United Kingdom

Funded Project!

Combined with other sources of funding, this project raised enough money to fund the outlined activities and is no longer accepting donations.
   

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